Becoming Your Own Advocate

1. Communicate your new diagnosis to your primary care physician or any clinicians who may be on your care team. Be sure to provide them with copies of CurePSP’s educational resources!

2. Ask your neurologist or movement disorder specialist for referrals to interdisciplinary therapies (speech, physical, occupational, social work counseling, etc.)

3. Become familiar with our suggestions on “Preparing for Doctor’s Appointments” to make the most of every visit. 

4. Download and print a copy of "Best Practices in the Clinical Management of PSP and CBD". Bring this with you to your next appointment with your neurologist or movement disorder specialist.

5. If your neurology appointment has been rescheduled, or was scheduled too far out, reach out to your team directly by phone or through your patient portal. It is recommended that people with PSP, CBD and MSA be seen every 3-4 months. 

6. Learn about our Centers of Care Network and check the map to see if there is a center near you! 

Looking for more ways to take action? Consider these steps…

1. Peruse www.clinicaltrials.gov or Fox Trial Finder to see what clinical trials are active and/or recruiting and find out if you are eligible for any studies. 

2. Use your voice for change! Help us advocate for public policies that can positively impact the CurePSP community. 

3. Look through our list of Assistive Devices & Adaptive Equipment compiled specifically for symptom management.

4. Read about our CurePSP Quality of Life Respite Grant Program.

5. Consider enrolling for our Brain Donation Assistance Program.